Forum:
High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Hi all. I am getting ready to go on Medicare later this year and was wondering if Medicare pays for a preventative mastectomy for high risk women? Does anyone have any experience with this? Again, this is a question about a *preventive* risk-reducing mastectomy for someone who does NOT have cancer. If I had cancer, I know Medicare would cover my surgeries.

I have LCIS and am still trying to decide whether to have a PBMx or not. From various things I have heard it sounds like mastectomy may be a problem once I am on Medicare, and I have been wondering if I should have the surgery while I am still employed with pretty good health insurance.

I called our State Health Insurance & Assistance Program (SHIP) in Missouri. They are volunteers but use the resources they have to try to find answers to people's health insurance questions and they told me, No they did not see that a *preventative* mastectomy would be covered by Medicare.

Then I had a surgery consult at our local NCI-designated cancer center yesterday and the breast surgeon told me that she had never had a high risk patient on Medicare turned down for a prophylactic mastectomy. She did say that Medicare does balk at reconstruction after preventative mastectomies however. That didn't bother me since I was planning on going flat (if I do decide to have the surgery) until she said that I would likely be left with dog ears under my arms. I asked if there was a way to avoid the dog ears and she said not without revision surgery which... wait for it! ... Medicare would likely consider cosmetic and would not pay for the revision!

I had a recurrence and surgery in Jan of 2019. I have a Medicare Advantage plan through my husband’s retirement and they would have paid for a bilateral mastectomy. My doctor refused, the cancer hospital I went to in Philadelphia will not remove a healthy breast unless woman is positive for BRCA gene defect. I am high risk, mother, myself (twice) and two of three sisters had breast cancer, but I am Negative for the BRCA gene defect

I don’t know if Medicare will pay for bilateral mastectomy. Medicare Advantage works differently. I would advise you to call Medicare directly to find out.

Hi Mavericksmom. Thank you very much for your reply. You’re right that original Medicare and Medicare Advantage plans may have different benefits. Maybe I should see if I can get through to Medicare but I am not actually on Medicare yet, so I don’t know if they will be able to help me. I am trying to scope this out before I actually retire and lose my current health insurance.

I hope you don’t mind me saying that it strikes me as unfair that a woman who has had ILC can’t get a mastectomy of her contralateral breast. From what I understand ILC can hide from imaging which leaves patients with heightened anxiety. There are plenty of high risk conditions that have nothing to do with the BRCA gene mutations. It seems like the docs are moving towards the most conservative treatments, not necessarily because it is in the patient’s best interest, but because it saves money.

Hi. I am on Medicare Advantage. The Medical Oncologist aided me with a diagnosis, severe back pain, in order to gain approval for a prophylactic mastectomy. She said it can be tricky getting that approval. But the spinal stenosis, family history, self-history, all helped. Good luck.

Irishlove, I too have Medicare advantage but it’s through my husband’s retirement from a large company. I noticed your mastectomies were about three months apart. Why didn’t you have both done at once? Was it due to the insurance?

I was denied a bilateral mastectomy by my doctor, who told me that the hospital policy is not to remove a healthy breast unless positive for BRCA gene defects.

It seems to me from an insurance perspective, that doing the bilateral in one surgery is not only better for patient but more cost effective. Nothing insurance companies do surprises me anymore.

Hi Irishlove. That’s interesting about having to make a case for the surgery. I am always amazed at the hoops the insurance companies make us all jump through! Not sure I could do that at this time, other than the fact that bilateral mastectomy is one of the three recognized treatment options for LCIS. It’s just considered the most radical of the options and has fallen out of favor with many of the docs/hospitals. Both BSsthat I consulted with felt it was a “reasonable” choice for me, but neither of them seemed to think it was necessary. I haven’t completely made up my mind about what I want to do yet, but I know I don’t want to lose this option as I move from my employer’s insurance and onto Medicare.

Hi light1candle! I forgot to say not only didn’t I mind your comment about it being unfair to a women to refuse a bilateral mastectomy for someone like me, I agree 100% and I told my doctor!

My mistake was not going elsewhere for second opinion. I went to a cancer hospital in Philadelphia. It’s too late for me now. I have no intention of having another surgery unless absolutely necessary but I also know I won’t be doing a lot of follow up visits with my BS! I plan to do follow ups with my MO and I still need to see my PS.

Following all this closely. Very applicable to me. Thanks for the question and the responses.

Irishlove, I noted your comment: "The Medical Oncologist aided me with a diagnosis, severe back pain, in order to gain approval for a prophylactic mastectomy." You also mentioned spinal stenosis. Can you explain the connection for me? Heavy, large breasts gave you back pain? MRIs or mammograms aggravated your back? Wondering if my spinal stenosis could "benefit" me should I need to use it as further justification for PBMX. Thank you.

I also noted the comment that Medicare might not pay for reconstruction when breasts are removed due to LCIS. That seems rather cruel if it is the case.